IVOR'S CHALLENGE
16 June - 16 July 2023
Earlier this year we were asked to support three year old Ivor in his challenge - to walk 1km around Catbrook every day for a month. Ivor was diagnosed with Angelman Syndrome just before Christmas last year and his family took on this challenge to increase awareness of Angelman Syndrome and to raise money to support FAST (Foundation for Angelman Syndrome Therapeutics). This was going to be a real challenge for Ivor as he hasn't long been able to walk any real distance, and he wouldn't be able to tell his mum what he was thinking - but he kept going every day and always kept a big smile on his face. Today he finished!
Ivor's mum, Sarah, sent this message as Ivor finished his challenge:
"Ivor finished his last walk today, hooray! Surrounded by lovely, happy people. What a crowd! I'm totally blown away by your kind support.
Scroll down for
more photos!
When I dreamt up this challenge my main aim was to spread awareness of Angelman Syndrome and to raise funds for FAST UK, to support medical research into Angelman Syndrome. I also wanted people to understand Ivor. This has certainly happened! We all now know a bit more, and we've raised over £4,500 (and still counting), a huge amount!
This month of walking has also helped Ivor. His walking has definitely improved, and although he can't talk yet he has certainly learnt the ability to communicate "another walk, oh you've got to be joking!!" And as for us, instead of dwelling on what Ivor can't do and our grief and worries for the future, it's given us the opportunity to celebrate and be proud of the wonderful person that Ivor is – a loving, happy and determined little boy.
More than anything I have been amazed at the simple kindness that has shown to us. From the bottom of my heart Thank you!
I'm not kidding myself that there will be a cure for Angelman Syndrome tomorrow, but there are so many encouraging trials going on around the world right now, and because of that we are allowing ourselves to hope - and in the meantime we'll keep on walking!"
Angelman Syndrome is a rare neurogenetic disorder (affecting about 1 in 15,000) causing delayed development, severe learning difficulties and issues with movement and balance. Most people with Angelman Syndrome will never talk and some will never walk. They need continuous care and will never lead independent lives, but there is hope with the advancement of scientific research.
Scientists believe that Angelman Syndrome has the potential for being cured and FAST (Foundation for Angelman Syndrome Therapeutics) - a non-profit organisation that provides funding for UK Angelman Syndrome research - is helping to drive this forwards. There are currently a number of really promising clinical studies and trials worldwide.
Here is a link to the charity's website
if you are interested in finding out more:
Here is a link to Ivor's Just Giving page:
PLEASE CONTINUE TO HELP BY TELLING YOUR FRIENDS OR DONATING!
The big finish - Sunday 16th July
We were SO lucky with the weather - the sun came out, everyone in anoraks cooked and we had a fantastic crowd - a BIG thank you to everyone who came along with children, dogs, ponies and a crocodile... We were also delighted to be supported again by David Davies, local MP and Secretary of State for Wales along with Richard John, one of our County Councillors. Ivor walked his lap around the village again, he crossed the tape at the finishing line and then there was coffee, tea, cake, biscuits and squash inside the village hall. It was a fabulous turnout - thank you to every single person who came along! Here are some photos of the day:
The latest photos - 14 July
Ivor's still going strong and there are now just two days to go! We're hoping LOTS of people are going to join in with the final walk on Sunday 16th and we have use of the hall afterwards in case we're wet. There will be light refreshments as well as biscuits and cake to celebrate Ivor's amazing achievement.
July 9th - going into the last week!
Ivor is now into his last week of walking, so here are some lovely photos of him out and about this week. If you'd like to join in this week the times to meet at the end of Tintern Heights are:
Monday 10 July - 4pm
Wednesday 12 July - 4pm
Thursday 13 July - 9.15am
Saturday 15 July - 4pm
Sunday 16 July 10am at Catbrook Village Hall for THE BIG FINISH!
Ivor's mum, Sarah, is delighted with the response she and Ivor have had on their walks, and is hugely grateful for everyone's support. We'd like as many people as possible next Sunday at the hall at 10am - there will be ponies, dogs and, yes, a crocodile... Please do come along and show your support for Ivor and his whole family.
Day 17 - Saturday 1 July
Two weeks tomorrow will be Ivor's last walk! We're hoping lots of you will come along to the last day - there will also be dogs, ponies, balloons and a crocodile... In the meantime if you'd like to join Ivor on a walk the times for this week are:
Wednesday 5th - 4pm
Friday 7th - 10am
Saturday 8th - 10am
Sunday 9th - 10am
Meet at the end of Tintern Heights as usual!
Day 7 - Wednesday 21 June
There are some lovely pictures of Ivor's walk today further down the page...
Ivor's mum says ""If anybody would like to join us for a walk we'll be leaving from the end of Tintern Heights at the following times this week: Thursday 22nd - 4.45pm, Friday 23rd - 9am, Saturday 24th - 10am and Sunday 25th - 10am."
Ivor's first challenge walk on 16th June
We had a fabulous turnout for Ivor's first walk today, and had this message afterwards from his mum:
"Today was Ivor's first walk around Catbrook. What a success! Slow, steady and full of warmth and smiles!
I am so very grateful for all your kind support - it really means a lot. We have raised a huge amount of money for FAST UK so far, and just talking about Ivor and Angelman Syndrome has been brilliant - thank you! If you'd like to donate, please follow the Just Giving link further down the page.
Only 30 more walks to go! We'll be walking at random times of the day to fit into our rather crazy routine, but if you do see us out and about please say hello and join us if you can.
Ivor's last walk will be on Sunday 16 July at 10am from the village hall. I'd very much like this to be as wonderful and supported as today's walk, so please come if you can!"